Personal Assessment?

[Skulls]

I have a phone chat booked with the GP today for a number of matters, the principal one being my perception that I deserve some degree of personal assessment by a neurologist in view of worsening mobility. Just how damaged is my brain and nervous system? I gather I am not going to get any better? My MP asserts that all ABI patients follow a treatment pathway but we know these clowns live on another planet. It has been 3 years since I last spoke to a specialist and I had to suggest he had my brain scanned to look for damage! The feedback afterwards was all bad but I still lack a prognosis. Are they afraid to deliver the truth?

[khathe]

I’m not sure how your GP works, but you are entitled to apply in writing to see your medical notes. It can take some time, but sounds like it would be worth doing for your peace of mind. The medical profession has a policy on honesty and transparency with patients. I’ve just seen a neurologist, and he sent me the assessment notes to me, along with my GP. He has discharged me from his care, as he feels no medical intervention from his speciality will help. I have been referred for MRI to rule things out, and also neuropsychology, however they may not be able to help either, it may be that I have to learn to live with my symptoms and the GP to help with strategies and management of these. Sometimes that’s all that can be done. I wish you all the best. Perhaps a referral to physiotherapy to assist with your mobility would be best course of action?

[Leaf100]

Hi Skulls,Yes, do have a look your medical notes. It may help.

In my case I found it not that helpful, as some docs were clueless.

I finally had to come to accept the prognosis was 'we do not know', and time showed I would never be well enough to work again.

It may be not that they fear saying the truth, but that they just do not know.

The other thjng I found really annoying as they asume brai injury = mental health issues and that is not always true. Some docs will put tour symptoms downto mental health whe they are braini jury as they don't know any better.

Not having any clear path is part of what makes it so difficult. Everyone is different. Some do manage to work, though find it is not the same as before. Some try to pretend they don't have an injury to deal with, and stumble along best they can.

Of course we all want 'the answer' but often there is not such a thing, not 'the answer'or multiples answers or really much explanation past a label and a shrug, though some folks do get particular labels.

Try not to let ot all get too frustrating, it is not a clear cut situation.

Remember to be kind to yourself in the face off all this uncertainty.

Leaf

[Kind345]

My injury occurred 19 months ago and throughout the process what I have been told is, the brain takes time to heal; for some it is slower. What the treating group (doctors, therapist) all is, there is no definite time period to say when you will be healed and you have to come to terms that you may never be back to what you were like before. That one was extremely difficult to accept. Have you been in any form of therapies? Be it physical therapy or vision therapy, Neuropsych? Have you seen a Neuro Opthalmologist or Neuro optometrist? These are the team of people along with the Neuro specialist such as a neurologist or one that is more trained, who will be able to help you. Unfortunately brain trauma takes a long time to heal and some of the issues we face can be permanent…sigh.

I’m in the US and I had to contract an attorney to help fight the insurance to approve what the doctors were ordering. It upsets my soul how these people can view us as a medical liability and nothing further. One thing I wished was for them to experience the same thing I am going through daily. This is a tough road to trot.

I can tell you it does get better; but it takes time. Good luck

[Skulls in reply to Kind345]

Hi kind345,I was examined by an ophthalmologist at St Thomas’ because I had been stricken blind by the hypoxia and my vision was very blurred when I was revived from my induced coma. Their reassuring diagnosis was there was nothing wrong with my eyes. Apart from home visits by occupational therapy and an assessment by a neuro-physio, I had no therapy/ rehab.

I spoke to a locum yesterday who said nobody would give me a prognosis. The brain must be the only organ in the body about which a “specialist” will not offer an opinion.

He’s going to look into available physio for me.

[Kind345 in reply to Skulls]

A cognitive therapist helped me a lot in my word finding. A Neuro Chiroparctor also helped me immensely. He advised me to walk daily n swing my arms while walking. He gave me vision exercises like the Hart chart, pencil push ups etc. for cognition he told me to do card matching games and word searches. The process is tedious and LONG. In addition to all these brain exercises I take Nordic DHA plus capsules and magnesium. This seems to help with the brain fog and of course trying to remember to pace myself and rest. Even if I don’t nap just lying with my eyes closed for about 15 mins seems to help my brain.